Well, we are on our third day in NOLA and we have a bit more information but still not much direction. After the physical exam in the ER, Dr Boudreaux said that I had an obviously distended small bowel and this was actually quite tame compared to days previous. He also had some x-rays done that showed a distended colon along with the significant amount of gas I can feel and hear.
Yesterday, I had a lower gastrointestinal series (google it if you are REALLY interested) and I now have a new number one procedure that I never want to have again. Getting an NG tube inserted while conscious was my old number one but this one blew it out of the water. The resident came by this morning and said that, from the scans and reports of the lower GI series, it, again, looks like there is an obstruction around the recto-sigmoid junction. This is right where some tumors were left behind after my last surgery and these are pressing on the junction as well as on the bladder.
At the time of my last surgery, they left these behind because they were considering the multi-viceral transplant for me and did not want to make the transplant more difficult. However, the metastases I have on the peritoneum and diaphram are preventing the option of a multi-viceral transplant and the tumors are likely causing an obstruction that is preventing nutrition now. Dr. Boudreaux proposed 6 weeks ago that we could attack those tumors with the nanoknife and I imagine that is what is going to happen soon.
Unfortunately, we don't know what soon is. We do know that Dr. Boudreaux has surgery this morning and that he also moved all his Friday clinic patents to this afternoon. Other than that, we know nothing. It is possible he moved the clinic patients to free up tomorrow for surgery or he could be going out of town this weekend and that is why he is clearing up Friday. Surgery could be next week, it could be some other time; we just don't know. I do know surgery almost certainly isn't today since I have eaten some breakfast (full liquid diet).
We did get some questions answered yesterday: The nano knife is still approved and available here. They have seen multiple instances of carcinoid crisis during surgery but chest compressions are actually easier when he can just place his hand against the diaphram and the heart. He also said he could just grab a chisel and crack the sternum and perform direct compressions of the heart but that would definitely put an end to this ski season... On the other hand, I would have a scar from groin to neck and that would be somewhat entertaining!
We do have a room at the Hope Lodge through the 20th of November and can easily extend it if necessary (not a lot of traffic there over Thanksgiving...). We also want to thank everyone that is helping out with meals and caring of the kids. It is wonderful to have such good friends and family to support us through these times.
Thursday, November 8, 2012
Friday, October 26, 2012
Back to the OR table
Tonight marks my 11 year anniversary of my cancer diagnosis. I actually did not find out until the 27th as I was too drugged up after my surgery but it was 11 years ago today that the first of many carcinoid tumors were cut from my body. It has been a long journey and there have been some very rough spots but, unfortunately, the rough spots are not yet over.
Over the last few weeks/months, I have been experiencing stomach cramps and rumblings/grumblings in my stomach that can be heard from 10 feet away at times. These have continued to increase in frequency and intensity and, two nights ago, I had nausea and threw up some dinner, 8 hours after eating it. What all these symptoms indicate is that my bowels are becoming obstructed.
I am still passing stool so I am at best only partially obstructed. A CT scan I had this morning confirms this as I have distended loops of my small intestine but no evidence of complete obstruction. A partial obstruction is not life threatening but it can become so if it turns into a complete obstruction as I experienced back in March of this year and 11 years ago. It does, however, need to be resolved.
Since it is not resolving itself and is just becoming more and more intense, surgery is the only real option. To this end, we are making plans to return to New Orleans in about 10 days to have surgery to relieve the constrictions, leading to some significant relief for me. We could probably wait but waiting could lead to my condition deteriorating (weight loss, weakness, ...), making surgery more risky and recovery longer and more stressful.
Fortunately, I am within 6 months of going off of long term disability (LTD) and I will be able to return directly to LTD without any issues. We checked with the Hope Lodge in New Orleans and they have many openings so Stephanie will be able to stay there rather than having to pay for a hotel room.
Surgery should be trivial compared to the three days and 22 hours I experienced back in May/June but it will be major surgery which is never a trivial decision. We are hoping that, besides relieving the partial obstructions, we will be able to have the stent removed from my bile duct. Furthermore, it would be wonderful to get the tumors around my rectum resolved but, since I will be squeezed into their surgery schedule, they may not be able to do this.
What are the plus sides? Well, getting rid of the cramps will be wonderful! Also, I will not get to ski until I have recovered but that should be around the end of December which is right when the snow is finally getting good! If they are unable to address the other tumors, I will have another 6 months to recover and make plans for follow up surgeries and be able to return to LTD without penalty.
Over the last few weeks/months, I have been experiencing stomach cramps and rumblings/grumblings in my stomach that can be heard from 10 feet away at times. These have continued to increase in frequency and intensity and, two nights ago, I had nausea and threw up some dinner, 8 hours after eating it. What all these symptoms indicate is that my bowels are becoming obstructed.
I am still passing stool so I am at best only partially obstructed. A CT scan I had this morning confirms this as I have distended loops of my small intestine but no evidence of complete obstruction. A partial obstruction is not life threatening but it can become so if it turns into a complete obstruction as I experienced back in March of this year and 11 years ago. It does, however, need to be resolved.
Since it is not resolving itself and is just becoming more and more intense, surgery is the only real option. To this end, we are making plans to return to New Orleans in about 10 days to have surgery to relieve the constrictions, leading to some significant relief for me. We could probably wait but waiting could lead to my condition deteriorating (weight loss, weakness, ...), making surgery more risky and recovery longer and more stressful.
Fortunately, I am within 6 months of going off of long term disability (LTD) and I will be able to return directly to LTD without any issues. We checked with the Hope Lodge in New Orleans and they have many openings so Stephanie will be able to stay there rather than having to pay for a hotel room.
Surgery should be trivial compared to the three days and 22 hours I experienced back in May/June but it will be major surgery which is never a trivial decision. We are hoping that, besides relieving the partial obstructions, we will be able to have the stent removed from my bile duct. Furthermore, it would be wonderful to get the tumors around my rectum resolved but, since I will be squeezed into their surgery schedule, they may not be able to do this.
What are the plus sides? Well, getting rid of the cramps will be wonderful! Also, I will not get to ski until I have recovered but that should be around the end of December which is right when the snow is finally getting good! If they are unable to address the other tumors, I will have another 6 months to recover and make plans for follow up surgeries and be able to return to LTD without penalty.
Wednesday, September 26, 2012
Back from NOLA with a hint of a plan
Well, New Orleans was an adventure like normal. We got lots of information on current treatments and future possibilities on Friday and Saturday and then went on a swamp tour on Sunday. Sunday morning was spent mostly in the French Quarter and it is quite impressive the amount of excitement that one sees for a home Saint's game in New Orleans.
Monday morning I was supposed to have an Endoscopic Ultra Sound (EUS) of the tumors near the rectum and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to the stent between my bile duct and duadenem. The EUS was done under twilight anesthesia and proceeded without incident.
The ERCP was another issue. As soon as the anesthesia hit my system, I started to go into carcinoid crisis with my blood pressure dropping to 80/40 or so. After a number of injections of sandostatin, I climbed out of the crisis and the procedure continued. The stent was removed and then replaced. In 3 months, I will have another ERCP to remove the stent, hopefully for good. So, I spent the night in the ICU yet again...
Tuesday morning, my surgeon came by and we chatted for about 45 minutes about the future. From what he had already seen from the EUS, it looks like the tumors around the rectum may be addressable using the nanoknife. Obviously, we would try to address other tumors at that time but how far we will go at that time remains to be seen. Dr. Boudreaux's opinion is that surgery is probably 6 to 18 months out which means that ski season should be on this year!
After getting a CT scan and getting released from the hospital, we went and talked to Dr. Woltering, the oncologist for about half an hour. We went through the tests they had done on my tumors and Dr. Woltering then went and spoke with Dr. Boudreaux for a bit about my situation. Dr. Boudreaux said that I was a time bomb, waiting to go off. Basically, my disease is very advanced and surgery is an exceedingly scary proposition without proper preparation and expectations.
Dr. Woltering said that they will present my case at an upcoming meeting of the minds. Basically, all the doctors at the clinic will get together and discuss my case, the methods they have at their disposal and what is the best course of action. As of now, there are two drugs that may be applicable to slowing the disease for a while. One is Sutent and the other is (I think) temodar. I am not certain on the second drug but we are still up in the air, waiting for the meeting of the minds.
I am hoping for a chance to get in on the PRRT trials that are starting here in the states but, if I do not get in on the trials, we may be taking a trip to Europe to get treated. The treatment assumes that I have a 'Krenning score' of at least 2 (goes from 0-4) and Dr. Woltering thinks I am probably a 3 or better. This means that I should have a positive response to the treatment with only 10% of those who get treatment who do not respond.
Cost is somewhere in the ballpark of $20k and insurance may pay for some, none, or a large portion of the treatment. That remains to be seen. Generally, one needs to pay for the treatment up front (usually they want a wire transfer of the funds) and then one wrestles with the insurance company to get payment. Obviously, this would be out of network and our out of network deductible is about $7k... This means getting on the trial in the states would be fantastic but that is not a guarantee.
So, still no certain plan but we do know that ski season is on for this year. Now if we can just get some snow!
Monday morning I was supposed to have an Endoscopic Ultra Sound (EUS) of the tumors near the rectum and an Endoscopic Retrograde Cholangiopancreatography (ERCP) to the stent between my bile duct and duadenem. The EUS was done under twilight anesthesia and proceeded without incident.
The ERCP was another issue. As soon as the anesthesia hit my system, I started to go into carcinoid crisis with my blood pressure dropping to 80/40 or so. After a number of injections of sandostatin, I climbed out of the crisis and the procedure continued. The stent was removed and then replaced. In 3 months, I will have another ERCP to remove the stent, hopefully for good. So, I spent the night in the ICU yet again...
Tuesday morning, my surgeon came by and we chatted for about 45 minutes about the future. From what he had already seen from the EUS, it looks like the tumors around the rectum may be addressable using the nanoknife. Obviously, we would try to address other tumors at that time but how far we will go at that time remains to be seen. Dr. Boudreaux's opinion is that surgery is probably 6 to 18 months out which means that ski season should be on this year!
After getting a CT scan and getting released from the hospital, we went and talked to Dr. Woltering, the oncologist for about half an hour. We went through the tests they had done on my tumors and Dr. Woltering then went and spoke with Dr. Boudreaux for a bit about my situation. Dr. Boudreaux said that I was a time bomb, waiting to go off. Basically, my disease is very advanced and surgery is an exceedingly scary proposition without proper preparation and expectations.
Dr. Woltering said that they will present my case at an upcoming meeting of the minds. Basically, all the doctors at the clinic will get together and discuss my case, the methods they have at their disposal and what is the best course of action. As of now, there are two drugs that may be applicable to slowing the disease for a while. One is Sutent and the other is (I think) temodar. I am not certain on the second drug but we are still up in the air, waiting for the meeting of the minds.
I am hoping for a chance to get in on the PRRT trials that are starting here in the states but, if I do not get in on the trials, we may be taking a trip to Europe to get treated. The treatment assumes that I have a 'Krenning score' of at least 2 (goes from 0-4) and Dr. Woltering thinks I am probably a 3 or better. This means that I should have a positive response to the treatment with only 10% of those who get treatment who do not respond.
Cost is somewhere in the ballpark of $20k and insurance may pay for some, none, or a large portion of the treatment. That remains to be seen. Generally, one needs to pay for the treatment up front (usually they want a wire transfer of the funds) and then one wrestles with the insurance company to get payment. Obviously, this would be out of network and our out of network deductible is about $7k... This means getting on the trial in the states would be fantastic but that is not a guarantee.
So, still no certain plan but we do know that ski season is on for this year. Now if we can just get some snow!
Saturday, September 22, 2012
No new guts for me (yet)
Stephanie and I have been spending the last couple of days at a patient conference in New Orleans for neuroendocrine tumors. There have been many very good presentations along with a few boring ones and some that have little to nothing to do with my variant of these tumors. Yesterday had a very emotional presentation from a patient who got a multi-viceral transplant.
A multi-viceral transplant is a transplant of two or more of the abdominal organs. This can be any of the small intestine, large intestine, liver, stomach, pancreas, or kidneys but the are all replaced in a single operation lasting about 8 hours. Today we got a presentation from the surgeon who has been performing all of these transplants at the university of Indiana. The transplants have been getting done since about 2005 and have effected a complete cure from neuroendocrine tumors for several people.
The survival charts are also quite interesting. The survival rate drops off as one would expect for the first two years but then it flattens. At this point, there is about a 71% survival rate and this continues for as long as they have been performing the transplants. Furthermore, many of those who have received the transplants are now living without any anti-rejection medication as their bodies have accepted the transplants as their own.
I have tumors constrained to the abdomen which is one of the primary requirements for this transplant and gave us hope for this being a possibility. However, I also have metastatic disease in the peritoneum that surrounds the abdomen. We asked the surgeon if a multi-viceral transplant could include the peritoneum and he said that he has not done it yet but did not see any reason it would not work. However, it is not something that he wants to do at this point.
What this means is that one of the cures we had heard about 3 months ago is not available to us at this time. On the other hand, if I am able to survive for another number of years, they may be willing to attempt this variant of the transplant on someone like me. So, one door closes but it may re-open in the future.
Tuesday we meet with my surgeon and the oncologist. After that meeting, we hope to have a real plan for the next few months/years and I will be posting again shortly after that meeting to let everyone know where we are going and what we will be doing. Thanks everyone for the warm wishes and thoughts as we work through this journey.
A multi-viceral transplant is a transplant of two or more of the abdominal organs. This can be any of the small intestine, large intestine, liver, stomach, pancreas, or kidneys but the are all replaced in a single operation lasting about 8 hours. Today we got a presentation from the surgeon who has been performing all of these transplants at the university of Indiana. The transplants have been getting done since about 2005 and have effected a complete cure from neuroendocrine tumors for several people.
The survival charts are also quite interesting. The survival rate drops off as one would expect for the first two years but then it flattens. At this point, there is about a 71% survival rate and this continues for as long as they have been performing the transplants. Furthermore, many of those who have received the transplants are now living without any anti-rejection medication as their bodies have accepted the transplants as their own.
I have tumors constrained to the abdomen which is one of the primary requirements for this transplant and gave us hope for this being a possibility. However, I also have metastatic disease in the peritoneum that surrounds the abdomen. We asked the surgeon if a multi-viceral transplant could include the peritoneum and he said that he has not done it yet but did not see any reason it would not work. However, it is not something that he wants to do at this point.
What this means is that one of the cures we had heard about 3 months ago is not available to us at this time. On the other hand, if I am able to survive for another number of years, they may be willing to attempt this variant of the transplant on someone like me. So, one door closes but it may re-open in the future.
Tuesday we meet with my surgeon and the oncologist. After that meeting, we hope to have a real plan for the next few months/years and I will be posting again shortly after that meeting to let everyone know where we are going and what we will be doing. Thanks everyone for the warm wishes and thoughts as we work through this journey.
Saturday, July 28, 2012
An amazing doctor
As you all know, I was in New Orleans this past week to meet up with my surgeon for the 6-week post surgical followup. We expected this to be an easy breezy meeting with the removal of my surgical drains, some short discussion of the next two months and a return home. Because of this, my wife did not join me on the trip and we gave my 15 year old son Riley the opportunity to take a trip to a new portion of the country for him.
Well, the visit with the Doctor on Tuesday showed that it was not going to be easy breezy but it should still be quite straight forward. The insertion of a stent between the bile duct and the small intestine would be done Wednesday afternoon as an endoscopy. Many endoscopies are done using twilight anesthesia rather than full anesthesia so we expected to get a cab ride to the hospital and then Riley would get a cab to take us back to the hotel after the procedure.
Since this procedure is a bit more complicated than 'normal' endoscopies, the doctor elected to go with full anesthesia. The anesthesiologist followed the proper protocol for carcinoid crisis, the same procedure used for my three days of surgery 7 weeks ago. For some reason, my body reacted and I immediately went into full carcinoid crisis as soon as anesthesia was given.
Fortunately, Dr. Boudreaux was in another OR and was able to come over and give me bolus injections of sandostatin over and over again until I came right out of crisis and they were able to continue with the procedure. Here is where the amazing doctor story starts.
Because of the crisis, I was not allowed to go home and needed to stay the night in the ICU. Dr. Boudreaux, knowing my son was with me and not my wife, offered Riley the chance to stay at his house for the night, offering to bring him back in the morning when he comes in for surgery or his wife could bring him in later. Riley thanked him but said he would stay at the hotel.
Dr. Boudreaux was not to be denied and found a room on the remodeled fifth floor of the hospital for Riley to stay in. Dr. Boudreaux then drove Riley to the hotel to get all of our stuff, check out of the hotel, and drove Riley back to the hospital to stay the night. I was completely unaware of any of this activity although Stephanie was in the loop the whole time.
This was an amazing act of consideration and compassion by a surgeon who did not have to do any of what he did. If you are considering treatment for your neuroendocrine tumors with the group of doctors in New Orleans, this is exactly what you can anticipate. Excellent care, knowledge, and compassion.
Well, the visit with the Doctor on Tuesday showed that it was not going to be easy breezy but it should still be quite straight forward. The insertion of a stent between the bile duct and the small intestine would be done Wednesday afternoon as an endoscopy. Many endoscopies are done using twilight anesthesia rather than full anesthesia so we expected to get a cab ride to the hospital and then Riley would get a cab to take us back to the hotel after the procedure.
Since this procedure is a bit more complicated than 'normal' endoscopies, the doctor elected to go with full anesthesia. The anesthesiologist followed the proper protocol for carcinoid crisis, the same procedure used for my three days of surgery 7 weeks ago. For some reason, my body reacted and I immediately went into full carcinoid crisis as soon as anesthesia was given.
Fortunately, Dr. Boudreaux was in another OR and was able to come over and give me bolus injections of sandostatin over and over again until I came right out of crisis and they were able to continue with the procedure. Here is where the amazing doctor story starts.
Because of the crisis, I was not allowed to go home and needed to stay the night in the ICU. Dr. Boudreaux, knowing my son was with me and not my wife, offered Riley the chance to stay at his house for the night, offering to bring him back in the morning when he comes in for surgery or his wife could bring him in later. Riley thanked him but said he would stay at the hotel.
Dr. Boudreaux was not to be denied and found a room on the remodeled fifth floor of the hospital for Riley to stay in. Dr. Boudreaux then drove Riley to the hotel to get all of our stuff, check out of the hotel, and drove Riley back to the hospital to stay the night. I was completely unaware of any of this activity although Stephanie was in the loop the whole time.
This was an amazing act of consideration and compassion by a surgeon who did not have to do any of what he did. If you are considering treatment for your neuroendocrine tumors with the group of doctors in New Orleans, this is exactly what you can anticipate. Excellent care, knowledge, and compassion.
Tuesday, July 24, 2012
Look ma, (almost) no tubes!
Almost there at least. Today I met with my surgeon, Dr. Boudreaux, in NOLA for my post surgical followup. I started the day with a cholangiogram and we reviewed that at our appointment. The cholangiogram revealed that there still is a bit of leakage from the bile duct which is not something desirable.
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
This means I need some sort of drainage somewhere to allow the bile duct to heal completely so that bile does not leak into my abdomen, leading to bad things. So, there are two options at this point. The first option is to leave in the external surgical drains. Losing these drains was my number one goal in coming to NOLA to see the surgeon so we are going to extend our stay by two more days and chose option number 2.
Option number 2 is to insert a stent through an endoscopic procedure. They will give me twilight sedation and then send a scope down my throat, past the stomach, and into the start of the small intestine, placing a stent from the small intestine to the bile duct. This will relieve the pressure on the bile duct, allowing everything to finish healing.
When we come back out in September for the full workup of my future, the doctors will again test to see if the bile duct leaks. If it does not leak, they will then remove the stent and I will be completely tube free.
Around the same time, I will get endoscopic ultra-sound imaging of the tumors around my rectum. This will give the doctor a feeling for how we could potentially attack those tumors and what sort of colostomy (none, temporary, or permanent) I will need.
We discussed other longer term options such as high dose MIBG scans or the PRRT treatment which work similarly, using radiation to burn the tumors from inside. SirSpheres could be performed in Denver which would kill many of the liver tumors, buying more time to treat the other tumors. A multi-viceral transplant is also still a possibility but it is not, currently, our first option.
So, not much change for now. My weight seems to have stabilized and my strength and endurance are returning. Hopefully, I will be returning to work and playing hockey soon!
Thursday, July 5, 2012
Five weeks post surgery
It is hard to think that five short weeks ago, I was going in for my second day of surgery. I have been home for about three weeks now and, this week, I have finally felt like my recovery is moving forward significantly.
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
When I got back to Colorado Springs, I immediately went to my local oncologist to get my Sandostatin LAR shot and he weighed me in at 171 pounds. Four months previous, that same scale weighed me in at 203 which gives me a 15% weight loss in just four months. Two weeks later, that same scale marked me at 165 which is not a good sign.
I believe I have now turned the corner for two reasons. I am now tracking my calories and targeting at least 2600 calories a day which should yield approximately a 1 pound/week weight gain. Additionally, Dr. Young has prescribed me some appetite increasing medicine (not THC, gotta keep that security clearance) which I have been taking daily. I have noticed a real improvement in my overall energy and am hoping to get good news from the Doctor's scale at my followup next week.
My body has taken a few hits as well over the last two weeks which could also be part of the weight loss. One of my drains indicated an infection and I was running a low grade fever (100-101). Dr. Young started me on an antibiotic which seems to have solved that issue.
Then, the weekend of 6/23, we went to a local lake with some friends for some fun water skiing, tubing, and wakeboarding. Stephanie got up for the first time on skis and all our kids did well on skis or wakeboards.
On Friday of that weekend, the T-drain that goes into the bile duct stopped draining completely while the JP drain increased correspondingly in volume. Over the weekend, the JP drain started reducing in volume but was still excessive while the T-drain only increased a small amount. I called my surgeon and he suggested we get a cholangiogram the following week.
The cholangiogram (dye inserted through the t-drain) revealed that the bile duct was indeed draining into the intestine as desired but there was a large blob at one point that looked confusing and so we went for a CT scan. The CT revealed that the left lobe of my liver had absolutely no venous activity. This means there was no blood flow through the left lobe of my liver which means that the repair of the artery to that lobe almost certainly had failed.
So now, rather than having 80% of a liver, I am now down to about 60% of a liver. Hopefully, the right lobe will now start to increase in size to compensate for the loss of the left lobe. Tumors will certainly invade the new liver growth but I hope we will be able to stay ahead of it.
My surgeon also suggested conservative treatment of the necrotic liver for the time being. This means no new surgical drains or active removal of the liver. For me, that is good since it means I can avoid another trip to the operating room, at least for now. We certainly will re-evaluate again when I am in New Orleans but I hope things are looking good then for the removal of the surgical drains.
Return to work? Well, my happy path would have me return to work the Monday following my New Orleans trip which is 7/30. I don't know for sure if I will make it but if my improvement of the last week continues, I think I can. April 2nd was my last day at work and I know things have both changed and stayed the same but returning to that will help restore my feelings of normalcy for my recovery.
And sports? Well, I hope to go to some open skate sessions over the next few weeks to just get my feet underneath myself but won't try any skating with pads until I get the surgical drains removed. Bike riding has also been sidelined as I am not supposed to lift more than 20 pounds right now and I know I pull harder than that on some climbs (there are no flat rides in Colorado Springs). That will start again after the removal of my surgical drains.
My hopes to do the toughest century in the US also have to be pushed off till next year. Fortunately, the ride allows one to roll one's registration over to the next year for exceptional circumstances and have granted me an exception. August 2013 is when I will be making the ride.
So, overall, things are looking up right now for my recovery. There is still a ways to go but I am on track finally!
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